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Feeling a bit frustrated with post viral fatigue, any advice?

Posted , 13 users are following.

pinkcuppa
pinkcuppa

Hi, I'm new to this forum so I'm sorry that this is all going to come off as a bit of a complain, thank you for reading and I would be grateful for any advice you may have.   

I was diagnosed with post viral fatigue this year following a bad virus.   Before that I was pretty healthy, I walked to work everyday and was at the gym a few times a week.  Now, although I have recovered a lot from when it first hit, I still struggle day to day.  Something as small as walking up the stairs knocks me ill, and a few hours out can leave me aching for days.  Even cooking a meal isn't usually an option.

I'm getting frustrated because although I can accept that nights out and shopping centres are out of the question (I'm in my mid twenties, so what I usually did), I'm still working full time, even though this means that most of my time off is spent resting (in pain) to try and keep myself fit for work.  I can't quit my job because we need the money but I'm not coping very well.  My employer is usually good but because there is technically nothing wrong with me (my doctor thinks it will pass, and its not classed as a disability) they won't make any allowances or accomadations, which means that its not unusual for me to work very late nights or six days a week. My performance is suffering and I worry about dismissal.  I want to work part time to give myself more rest (and be better at my job) but I won't be able to pay the bills, and my family don't think this is an option for us.

I've tried going back to the doctors but although she has run blood tests etc, I kind of get the feeling that she doesn't see why I'm bothering her, as she just tells me that recovery can take several months, and its not quite been six.

It just leaves me frustrated because I feel so guilty about being ill.  Although they tell me to rest and recover, it seems to be as long as I can manage pretty much as I did before.  I know I put too much pressure on myself, but I feel as though I'm doing something wrong by needing help now, even though I've worked my whole life.

Does anyone else feel this way?

Thank you.  Best wishes to everyone.

0 likes, 33 replies

33 Replies

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  • jackie00198
    jackie00198 pinkcuppa

    Posted

    So sorry you have to deal with this at such a young age. I've had ME/CFS for several years. Please be careful and get the rest you need. Don't do what I did, which is push myself, which resulted in a relapse and much worse symptoms. You have every chance of recovery if you take it easy. I understand that there are financial considerations, but if you get worse and really can't work (which is what happened to me), you'll compound the problem.
    • pinkcuppa
      pinkcuppa jackie00198

      Posted

      Hi Jackie sorry its taken me a while to get back to you, I've just wanted to sit on the couch after work this week. I'm trying to rearrange things to get more rest and reduce my hours at work a bit. Thank you for your support smile I hope things become a bit easier for you too.
  • wknight
    wknight pinkcuppa

    Posted

    Are you in the UK and how long have you been in your job and is sounds like its a large company if they have occupational health dept.

    The UK gives you lots of protection and although its easy to say that they can't dismiss you, they need to be careful, because you can sue them for wrongful dismissal.

    I know exactly what you mean about keep going because I am single and I am now much better once I learnt how to pace myself but its incredibly hard to do when you are working.

    Assuming you are in the UK, find a GP in your practice who believes in CFS and see them. If not move to another practice if there is one around you. As others have said it takes a while to get a diagnosis and it will have to come from a specialist so this isn't going to be quick.

    In the mean time if you have been in the company for a while declare that you have a problem with fatigue and go see OH. Why, because the minute you do that, it makes it very difficult for the company to dismiss you because they have a duty to help you get back to full time work. Once OH are involved they may send you to their own people and pay for it (depends on the size of the company) and phase your work.

    In my experience if you keep going the house will eventually fall in on top of you and it will be very hard to climb out. It has taken me over 15mths or careful pacing to stop the long relapses I was experiencing. Best of luck

    • pinkcuppa
      pinkcuppa wknight

      Posted

      Sorry about the late reply, i havent had much energy after work this week. Im in the UK and I've been there a few years now so i've had a chat with my boss about reducing my hours due to my low energy levels and thats set the ball running. Ive also gotten the contact details for HR and occupational health if they cant help, at least now I know my options a bit better. I hoping I can get back to normal and this will only need to be short term. Thank you for your advice, and good luck to yourself as well.
  • bronwyn97278
    bronwyn97278 pinkcuppa

    Posted

    Hi pinkcuppa;  I have read all the other comments, and agree totally re the "pacing and looking after yourself now".  However, I am picking up on the "pain" that your are speaking of:  can you actually explain what Type of pain you have/get when you are tired/after exertion?   CFS/ME does not always cause pain, but Fibromyalgia does, and you mentioned "the light affecting you", and head spins??? The other thing to look at is your Thyroid....there is another lady who replies on this forum who has done a lot of research into these conditions, and has found a lot regarding many of the sufferers of CFS and Fibromyalgia, also have a decrease in size of Thyroid when shown via Ultrasound, also that on special blood tests, that the T3/T4 Uptake is not working properly, and if treated with a small dose of Thyroxin, the health issues are much improved.  This lady is taking same, and says her health has increased by approximately 60%.   I have had my bloods done for this, and am awaiting for the results....if you feel that by even trying to get a referral to a Rhuematologist, they may know much more re this research....mine did, and she ordered these bloods for me.     Wondering if you think/feel this fits into what you are feeling?   There are other aids too that I use for my muscles, being Magnesium. .....do some research on the Internet, and see what you come up with?      best wishes for some improvement.....Bron
    • pinkcuppa
      pinkcuppa bronwyn97278

      Posted

      Thanks bron, as mentioned above sorry about the late reply, I've been tired after work this week. I'm working on the pacing myself now. As regarding to the pain it tends to be muscle aches, but also deeper pains in my hands, feet and chest, sometimes moving up my limbs. I had a quick look at that Fibromyalgia but from what I could see the symptoms were almost indistinguable. I think the tests around my tyroid might be worth chasing up though, as although my blood tests were normal, thyroid problems do run in my family, and it seems to fit really well. I've tried a few supplements now but not magnesium so im going to pick some up at the weekend and give it a go. Best wishes to you, hopefully your blood test means you see some progress.
    • bronwyn97278
      bronwyn97278 pinkcuppa

      Posted

      Thanks pinkcuppa....yes I am a lot luckier than a lot of others on this forum, in that my rhuemy and GP are very open to suggestions....have my script for my Thyroxin...just need to get it filled and started...(it comes down to finding the Energy to do same)smile...Bron
  • rose02814
    rose02814 pinkcuppa

    Posted

    Hi pinkcuppa- I am in a similar situation as you. My symptoms started 5years ago but in hind sight I think it may have started a lot earlier. It started off with a bacterial infection in my gut, which then started all my other symptoms.I have typical chronic fatigue syndrome symptoms with brain fog, burning pain in the arms, leg an back, fatigue,shaking and jerking at night, sensitivity to light and loud nose. I had to see several GP's and make several appointments for them to listen to me and make referrals to see specialist. After many blood tests and scans and they all come out relatively fine with few wear and tear which does not explain the symptoms I get. I've had EMG tests to also rule other illness's out. I'm now on several medication and have been referred to cope management programme to help me manage mentally and physically. I have also spoken to my employer about my diagnosis and they have informed me they will refer me to occupational health. I want to take some time out of work but fearful of how it will effect me financially as my husband has debt and will not be able to sustain us. There are good and bad days but there are days where I feel like giving up. Also the thought of giving up work also scares me to death because a part of me feels that I will be giving up my independence. 

    Like what the others have said you are not alone and we feel for you. Badger your Gp's until they listen to you. Get them to refer you to a specialist who can explore your symptoms further. Try taking calcium and magnesium supplements as they are known to help with fatigue and the nervous system. Also ask take up on the occupational health at work it will help you in the long run so you don't have to worry much regarding dismissal etc.

    All the best and hope you get the support you need to recover and give you some peace of mind.

    • david59662
      david59662 rose02814

      Posted

      Hi Rose, fellow CFS'er here, 18 months. What bacterial infection did you have in your gut ? Thanks
    • david59662
      david59662 rose02814

      Posted

      Interesting i had that too, the triply therapy seemed to cure it as i tested negative after. Still unwell with CFS.
    • rose02814
      rose02814 david59662

      Posted

      I had to go on to that therapy three times but the third treatment I could not complete the treatment because of nausea. 
    • rose02814
      rose02814 david59662

      Posted

      I'm not sure. Symptoms subsided just occasional heart burn. 
    • david59662
      david59662 rose02814

      Posted

      Did you not ask for a follow up test after abx ? You can use herbs and mastic gum to deal with h.pylori.
    • pinkcuppa
      pinkcuppa rose02814

      Posted

      Hi Rose sorry about the late reply I've just been sitting on the couch after work this week as low energy. I'm sorry to hear that you've been ill so long, and that its been such a struggle to get a diagnosis.

      I understand how you mean about things financially, as its the one thing you can't let take care of itself when your sick. Can you apply for any debt management or benefits as mentioned by other posters to help you out? It is hard to give up the routine of work, which is why I'm just trying to reduce to part time for now.

      Thank you for your support, I've got another appointment next week and I'm at least more sure about what to say to the doctor rather than just hoping for the best. Best of luck with your recovery as well.

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